CRPS, formerly known as Reflex Sympathetic Dystrophe (RSD) or Causalgia, sometimes called Sudeck’s Atrophy, and elsewhere called Neuroalgodystrophy (among other things), is confusing to label accurately because it’s not only complex, but it’s a disease of exceptions.

In many cases, pain is not sympathetically maintained; hence the deprecation of the name RSD. Atrophy doesn’t always happen; hence the deprecation of the name Sudeck’s Atrophy. And, most importantly, it is not a psychogenic disease[1], making the name neuroalgodystrophy, or the presumptive diagnoses of somatoform disorder or conversion disorder, irrelevant — not to mention prejudicial and counterproductive.

The earliest professional description in the historical record of a syndrome like CRPS occurs in the notes of Ambroise Pare’, groundbreaking surgeon and father of forensic pathology, as well as court physician of French king Charles IX in the late 1500’s[2]. Between North America and Europe, further descriptions and case studies appeared over the next few hundred years[1]. Consistent diagnostic characteristics were described by neurologist and American Civil War battle physician Silas Weir Mitchell in the mid-1860’s[3], who saw many hundreds of cases due to the peculiarities of the ballistics used in that war.

Thus, CRPS does not qualify as a “disease of modernity”, the cluster of diseases characterized by distributed pain, lethargy, memory/cognitive impact, and immune dysfunction. In fact, it predates the Industrial Revolution by a couple of centuries. CRPS has also been described in animals[4]. In short, there is no compelling evidence that CRPS is anything other than a disruptive companion of mammalian neurology, which has become more recognized as humans are living longer despite impairments, and describing illness better.

Various attempts have been made to create coherent diagnostic criteria. Sadly, they’ve been written and published by physicians, who rarely have the distinct skillset of information architecture — but who do have lots of practice using double negatives, complex constructions, and the passive voice. The inevitably garbled paragraphs which result from using this professional style to describe the diagnosis of Complex Regional Pain Syndrome come across, however unconsciously, as sloppy and ill-defined, regardless of the underlying information.

After much thought and research, this blogger’s view is that the most recent (2013) IASP diagnostic criteria[5] may not be perfect, but are currently the best we have for all-around clinical use. Therefore, in the interests of obviating (that is, doing an end-run around) the confusion, this blogger — who is an information architect — has turned the diagnostic criteria into a simple checklist.

Once completed for each patient, this checklist not only delivers a yes/no for CRPS diagnosis, but also highlights which features of that case are salient, and where treatment of that person should probably focus.

Full-sized PDF format is downloadable and available for free under Creative Commons Share-Alike Attribution International licensure. In other words, wherever you are in the world, you are free to use and alter this, copy it, pass it on, even charge for it — as long as it contains a link to this page (biowizardry.info) or its companion page, livinganyway.com, and you don’t try to claim or assert IP rights. It’s appropriate to pass it on as freely as it’s offered to you. Use it in good health — whenever possible.

I have problems with using the word “numeracy” to mean “numeric literacy”, but I can adapt. To me, the word “numeracy” means “of or relating to numbers”; therefore, to be numerate means to be of or relating to numbers, and that doesn’t make sense.

This spasm of reflexive linguistic conservatism will pass and then we can get to the point…

Numeric literacy (however you name it) results in better decisions. Those who are numerically literate are better able to understand information that’s represented by quantities and numbers, and not be confused by sloppy descriptions and poor representations. They have better outcomes in health care, work and other areas where decision-making really pays off.

The fun part is, that this article’s writer makes the point that the spin doctors are gonna pounce on this, as if they haven’t already:

“This has implications for how policy makers and others should communicate about the risks of medicines, earthquakes, climate change, and the stock market.”

Caveat emptor, from here on out!

Make your decisions emotionally if you must, but get the data first, so at least you can really see what you’re risking.

Then, remember your fifth grade math and see how the numbers add up. (The kinds of statistics that get published in the news rarely require anything more, so don’t let the math intimidate you.) That intellectual integrity can save your life.

Do you know why this is, logically, a candidate for the Department of the Blitheringly Obvious?

It has to do with fetal development. In a healthy pregnancy (that is, most of them), labor starts when the fetus’s lungs — the last thing to finish developing — are done. Then the fetus signals the mother’s body, and labor begins.

The neurological system and heart are getting the finishing touches in those last few weeks, too. The final stages of fetal development are extremely important, and ever more so as it gets harder and costlier to get care in this country.

They pop out faster, yes. They also tend to need time in the neonatal ICU.

But wait, there’s more.

This article goes on to say that premature babies tend to have lifelong problems with — you guessed it — heart, lungs, and neurology. Neurological issues that consistently show up relate to coordination; learning (especially math); memory; and, most worryingly, hypothalamic-pituitary adrenal (HPA) axis problems — which messes up the body’s ability to regulate weight, growth, anxiety, sleep, and mood; it’s a major factor in CRPS, MS, and other constitutional illnesses.

These people are far more likely to require extra care and attention from parents, school, doctors, nurses, and therapists of both body and mind, _throughout_their_lives_ — or at least, as Prof. Sullivan has shown, to the age of 21. More data to follow, as the study continues.

This is why I find “elective c-sections”, which are often done at 37 weeks just to avoid the final stage of pregnancy, so appalling. They combine the drawbacks and long-term effects of prematurity with those of nonvaginal delivery and abdominal surgery. A full house, you might say.

Back to this article, which focuses on people who were born 21 years ago, when prematurity was not optional.

She states that these personalities tend to be more driven and success-oriented. On the one hand, that could be the cortisol talking (remember the lack of regulation? These people have higher than normal cortisol levels.) On the other, these are all people who have had a higher than average level of care, attention and structure in their young lives, and that tends to produce these characteristics anyway. When young people internalize the message that there are a lot of capable adults who really care what happens to them, they don’t see failure as anything but learning how not to do it next time. And that’s a setup for success.

Having explicated her stated finding, I have to say that she did not, nor did I read anything here about how she measured these personality characteristics. In short, it’s possible she was looking for ways to make everyone feel better about the learning disabilities and systemic issues.

And that, frankly, is one of the common characteristics of nurse studies that tend to lessen the respect they otherwise deserve: nurses who achieve worldly success don’t get there without being good at making decision-makers feel good.

I looked for the text of the study at her site, but no luck. I’ll look on PubMed once I’m off this handheld. I’d like to clear up that last gratuitous silliness, if I can.

* Can’t find it on PubMed. It was published very recently, so it might be worth checking back.

The final diagnosis was determined by postmortem autopsies examining structures and changes in the brain, which are pretty definitive.

Most dementias are currently incurable, and only some can even be managed. So why does this matter?

Two reasons: the clinical and the academic — which is ultimately clinical, too.

Firstly — and I’m speaking as someone who has skirted dementia myself — if anything can be done to mitigate this hideous state, it should be done. Correct diagnosis improves your chances of getting appropriate care.

Secondly, incorrect diagnoses screw up the data. How can we evolve our understanding, improve diagnostic criteria, develop more effective treatment, and work on actual cures, if we aren’t clear about what we’re working with and how it plays out?

What’s lovely and touching about this is, the researchers truly believed that correct diagnoses were much more common, and that the communications between the neurology department and the geriatric psychiatry clinic were better than they were … and that they changed their stance dramatically in response to their findings.

Knowing how cautiously physician researchers normally phrase recommendations, and how neutral and respectful Swedes prefer to be, the researcher’s closing remarks sound like a passionate cry from the heart. It’s really moving.

The article goes on to say that old people go to great lengths to stay active and connected, and use their well-seasoned brains to problem-solve issues of daily living at a rate that makes most younger people look like pikers.

In this article, they actually used the term “extreme lengths” — obviously they haven’t considered what it’s like to be old. You simply have to cope, in order to have a life worth living, and your friends help you figure it out. Doesn’t that seem pretty self-explanatory?

Nurses could have told them all that, plus a bunch of gruesome stuff about skin care, but study scientists pay even less attention to nurses than they do to patients. I’m just glad someone FINALLY thought of asking the only people whose opinion on “quality of life for the elderly” really counts.